Today was another Cancer Center checkup for Joshy.  Last month numbers were abysmal!

I was hopeful going into today checkup because recent checks at the local hospital have shown improvement.  I was hopeful, yet a little afraid to hope.  The past 2+ years have been filled with so many disappointments, it is sometimes hard to hold on to hope.  It hurts to get your hopes up and then have them come crashing down.  However, today, for once, all of Joshy's counts are above the 1/2 way to normal mark  (Well, his neutrophile counts aren't quite there, but... hey...everything else is )  The doctor even smiled and gave us the thumbs up sign at today's checkup!

RBC's 316 (up from 250)
Hbg 11.0 (up from 8.5)
Plt 91 / 91,000 (up from 38 / 38,000)
WBC's 2.0 / 2,000 (down from 2.3 / 2,300) *WBC's have been bouncing around all over the place for the last couple of weeks and todays numbers are up for a low of 1.4 / 1,400 at the local hospital 2 weeks ago!!
ANC 456 (down from 760)

ALSO the cyclosporin, immunosuppression drug, concentration was actually running a little high (we are constantly struggling to get it up into the optimal range), so we nudged the dose down just a tad.

These numbers are just 8 days after stopping the benzalin (epilepsy med), which means that some of the drug could still be in his system.  (It can take 2+ weeks to totally clear a drug from the body.)  The doctor is thinking there is a connection, but in another month we should know for sure.  I think we are all excited to see what next months levels are!!

Praying this is just the start of better numbers!  Joshy's next checkup is March 4th.   You know... if his numbers make as big an increase as they did this time, they would be just about picture perfect.

Here's to hanging on to HOPE!

Joshy was paroled yesterday  Labs looked fairly good, except that his AMY (Amylase - an indicator of pancreas trouble) was high.  It has been running high, but yesterday it was higher than it has been.  The doctor was somewhat concerned about it, but decided to send us home anyway.  The doctor told us to keep a look out for abdominal issues and to call/come in if anything came up before his Friday checkup.  Everyone was thrilled to be home.  Joshy went from toy to toy, room to room exploring.  We were able to watch a few favorite shows while we relaxed.

This morning, Joshy was in good spirits.  The girls settled into school work.  I attempted to get a few things sorted back into a routine.  Everything was going swimmingly until lunch time at which point Joshy decided that keeping things down was optional.  After 3 episodes and bring up more than had been put in, a call to the hospital was warranted.  Of course, they told us to come in.  We went packed to stay!

First doctor, a doctor I have never seen before, checked Joshy over, looked at previous labs results, ordered more labs and chest/abdominal x-rays.  While we waited on results, Joshy's regular doctor came in.  He assessed the situation and after looking over the new test results, decided that we could go home.  He sent us with enough anti-vomiting meds to last until Friday, but said if they were needed that long to bring him in sooner.  The doctor also made 1 adjustment to the new epilepsy med in hopes of settling down seizures which have increased (due to illness or due to still coming off meds ??? )

I honestly thought we would be checking in again.  Being home is so much nicer!!  We are giving fluids little & often while praying that Joshy will settle down and stay home!!  So far he has kept everything down since mid afternoon.

BTW - today's labs showed that Joshy's AMY has gone down a little

I am home for a little while so thought I would give an update...

With the decrease in the possible (probable ?) epilepsy med that is causing issues, seizures have been crazy.  (He should be completely weened off it this weekend.)  We gave emergency meds Thursday evening to help settle things down.  The doctor has been searching for a new epilepsy med that will not cause interactions with the immune suppression med - Neoral/cyclosporine (The list of drugs that react is L.O.N.G and detailed).  We also need a drug that does not cause acidity issues.  Finding a drug that fit both of these criteria took some doing!!  After much searching and many rabbit trails, the doctor finally found one - Lorazepam.  Joshy started this new med last night (Fri.)  Doctor wants to keep Joshy for observation through the weekend.  We will run labs Monday to check things out.  Then if seizures are under better control and labs are looking better we will be able to head home.

The doctor looked over the 2 nights worth of CO2 results with & without the bipap.  The conclusion, the bipap is not helping enough to warrant the nightly war/lack of sleep.  Therefore, last night we were bipap free and Joshy slept ALL night.  I can't say I did the same, but I at least slept on my own cot all night.  Even though I woke up a few times, all in all, I slept much better.  I will be taking another blanket back to the hospital with me which should help me sleep better!

Praying these med changes to the trick.

In the mean time, Joshy is a happy little camper!  He is acting much more like his old self...

I, on the other hand, stink (a nice hot bath is next on my list of things to do!).

I will be heading back to the hospital tonight, before night time meds, and staying until we are either Joshy is released or my Monday classes.  I find this new "improved" xanga impossible to manage from my cell phone, so LORD willing, the next update will say we are home

Here goes an update from a semi-brain dead mama.

Monday Josh had labs and xrays.   We also changed rooms & had a mask fitting for bipap.  These last 2 things didn't actually happen until after I had headed home for classes.  The doctor came in shortly after I got back to the hospital and went went over lab results.  Nothing much had changed since Joshy's last labs.  CO2 levels were a little better, but still high.

Tuesday he had an abdominal echo.  He was also set up on a CO2 monitoring machine over night.

Overnight Bipap is...ummm...interesting.

Monday night Joshy tolerated it for about 3 hours.  Then he took the mask off in his sleep.  I put it back on, attempted to settle back down - almost got comfortable - and he took it off again.  Repeat process.  The 3rd time he was having NOTHING to do with having the mask put back on, so we left it off.  He was then restless the rest of the night.

Tuesday night he made it about an hour before the mask removal reflex kicked in.  I ended up sleeping with him and at least 1x/hour putting the mask back on him.  About 4am he finally gave up and slept until 7 with the mask in place.  He did make it all night with the mask on most of the time.

Today, the doctor came in just before I changed places with Jerry, so we were both there.

• GOOD NEWS - Liver looks good.  Kidneys are both the same size and look good.
• BAD NEWS - Gallbladder Stones were found.  At this point they don't seem to be bothering him, but they are a concern.  I also have not had time to research to see if Gall Stones might be causing some of the other issues.
• PLAN -
  • Labs again today.  (Need to check drug concentrations.)
  • We will be continuing the weening of one seizure med - another decrease starting this evening with a final decrease some time next week.
  • We will see how he handles things before starting a new med.
  • We will be hooking up the CO2 monitor an hour or so before we put the bipap mask on to see if the bipap is making any real difference.
• POSSIBILITY - The doctor also talked about sending us to an epilepsy hospital.  He is wondering if brain surgery might be needed, helpful, an option.

Joshy is playing fairly well when he is not seizing & eating well - this child love hospital food  I think his CO2 levels being a little lower is making a difference in the play department.  He is still not back to normal Joshy level of play, but he is not as lethargic as he has been either.   Still no idea when we will be released, so we will keep hanging out as we wait for tests to shed light and/or more tests to be ordered.

Things have been...ummm...interesting.  Joshy has not been quite himself since October when he was in the hospital.  Seizures have been crazy.  Adjusting seizure meds likely caused his precariously balanced, slowly climbing blood counts to plummet.  Lowered the seizure meds back down, but they are still showing high in blood concentration... actually both of his seizure meds are showing higher than ever even after one was lowered and the other, which was showing normal concentrations remained the same.  His blood CO2 is also higher than ever AND tests indicating kidney problems are getting worse.

Long Story Short

Joshy is being admitted to the local hospital on Monday for testing.  We need to get to the bottom of things.  We will be attempting to hook him up to bipap while he is sleeping, meaning one of us has to be there at night with him.  We will also be doing lots of kidney tests.  Plus, I believe, we will be weening him off of at least 1 and possibly both of his current seizure meds and introducing new medication(s) in hopes of getting seizures under control.  The doctor said he will be in a week.

In the mean time...

life continues.

Today was Joshy's cancer center checkup.  There were some good points & there were some bad points.  Over all, I think this graph of his lab results for the last month says a lot...

Here is a graph showing the last year...

In Japan we do まる (maru) O and ばつ (batsu) X... good & bad.

Looking at the good & the bad.

O - Joshy's levels are still high enough to avoid a transfusion

X - His RBC's & hbg dropped again

O - His reticulocyte (baby red cell) count is high.   This could mean that the low number of RBC's is going to change and start going up.  It also indicates that his bone marrow IS at least producing blood cells.

X - the tests that can indicate kidney damage are all running high.  This could be due to his immune suppression meds or his epilepsy meds (or the phase of the moon, knowing Joshy )  The doctor would have liked to increase his immune suppression med today, but with the labs showing kidney issues he decided to wait until next month.

O - we are still on a monthly check up schedule.

X - Labs showed a slightly elevated infection indicator (CRP) count.  We discussed this, last week Joshy was not acting right.  It is very possible that he was fighting a bug of some sort and the elevated numbers are actually going down.

The cancer center doctor, hematologist, will be emailing Joshy's regular local doctor, neurologist, to discuss one of Joshy's epilepsy meds.   The med that we adjusted in Nov & Dec before Joshy's blood levels took a nose dive have been in Joshy's drug cocktail since before Joshy got sick with Aplastic Anemia (AA).  When we were first entering the world of AA we went through weeks of trial and error drug weens hoping and praying that it was a drug causing the problems and not actual AA.  Only 1 epilepsy med stayed on board.  Now with the recent drug increase & blood decrease, the hematologist would like Joshy to be weened off of it.

Here in lies the rub... as I have mentioned before immune suppression meds & epilepsy meds do NOT play nicely.   Weening any medication can be tricky.  Weening epilepsy meds, under normal conditions, is usually more tricky than usual.   Weening (or increasing) epilepsy meds when immune suppressions meds are also in the cocktail adds a WHOLE new dimension.   Part of me is hoping the doctor will decide to admit Josh during the drug ween - I am serious!  IF they could/would monitor the immune suppression med levels along with the seizure med levels I think I would have a whole lot more peace of mind.    At the very least, I am hoping we can have at least weekly labs during the ween (provided the neurologist goes for it).  We also have to keep in mind seizure activity and the very real possibility that a new seizure med will need to be started in order to keep seizures somewhat controlled.

SOOOO... yeah...

The vacation that was sort of a vacation...

errrr...

Vacation in name only...

I am having a hard time coming to grips with the fact that our vacation has come and gone but I honestly do not feel like we really had a break at all :/

hmmmm...

Maybe looking at some of the highlights will help?

◊ We had Christmas Eve & Christmas Day for simple family time.  No moving.  No house guests.  Just us

◊ Robin came down to hang out some and volunteered to hang out with the kids so that Jerry & I could have a date   Because we had a willing adult in the house, we felt we could venture a little further away so we went to the mall.  We even splurged on a nice dinner out

◊ Friends came over for an afternoon of Wii followed by pizza for dinner.

◊ The ECS move is FINISHED.  We actually had everything out by the 23rd.  Then, honestly, it has only taken a few 1-2 hours chunks of time to get things set up.  All in all, the move went very smoothly & the new place looks really cozy!

◊ We had some fun movie & game times.

I think much of my lack of "vacation feeling" comes in my idea of vacation... To me, vacation is down time, family time, time when I don't have to worry about things.  As has been the recent "norm", we ended up with house guests during most of our vacation.  Where in, I enjoy having people over (I enjoyed it MUCH more before Joshy got sick), having people over also means more work, which to me is not vacation.   I have had a real struggle with my attitude.  I know that this has not helped, but I haven't been very successful in changing my attitude either.

Another point in the lack of "vacation feeling" is due to Joshy's health.  He has had some real struggles.  Actually, he hasn't been normal Joshy since the end of October.

SO...

I sit here lamenting the fact that vacation has come and gone.   I am clinging to the fact that there will be other vacations ahead... Maybe even real vacations

Wishing everyone  a very Merry Christmas!

The old ECS, English Communication Service (our language school), is now E.M.P.T.Y!!  Well, except for the phone, which we will get in a couple days once our phone line has actually been moved.

Here is a quick peek at the new place.  Please remember that we are still unpacking!!

Come on in... From the door you can see the coffee/tea area and the door to the office / teacher's room.

Office / teacher's room from the inside.

Kitchen and shoe box (slippers are in the top, with space for shoes in the bottom of the brown cabinet)

To the left is the lounge & classroom (the lounge can be a 2nd classroom if needed or we can open the doors between the rooms to make a bigger area as needed).

 Storage closet in the classroom for teaching materials.

Because we need a big shoe box and we want to keep the kitchen as open and clutter free as possible, we slipped the fridge into the area where a washer would normally go.   This would also be the changing area out side the bath.  The ECS bath is doubling as a storage room,  (Gotta make the space work for us )

Yes, there are still many boxes.  I figure we need at least one more full day of unpacking & sorting before we are really settled.   This will happen sometime during vacation but NOT until after Christmas!   Things won't truly be settled until Jan 6th - our 1st day of classes.  Our secretary will be back from break then so she will be able to put the office to rights.  We have also ordered an overlay wood floor for the classroom, which will be delivered until Jan 6th - cutting it close, but we'll make it.

It feels W~O~N~D~E~R~F~U~L to be out of the old building!!

For the last week my oven has been getting a workout!

The 14th, friends came and we baked cut out cookies to be decorated by the Sunday school kids.  The cookies were them delivered to church neighbors.  We made 25 cookie plates which also included the pipe cleaner angels we made the week before.

There was also cookie baking for all our classes.  All the kids classes had Christmas parties during class time & the adults just enjoyed cookies & tea while they studied.  *Kid's classes also needed to meet in the lounge rather than the classroom because the roof leak had spread.  It was a challenge, but still fun!

Saturday morning (21st) was the Sunday School Christmas party.  We had a symbol of Christmas craft, cupcake decorating, songs & story, then lunch.

Saturday evening was the ECS Candle light service / snack party at our house.  We had several new faces come for a total of 18.

Today was the all church Christmas party.  I tried a new recipe for the pot-luck: Christmas tree cinnamon rolls.   The girls were part of the Nativity play; Bekah was an angel & Kei was Mary.  I didn't get to see it because I was home with Josh, but a friend sent pictures  LORD willing, Joshy will be healthy enough that next year we will be able to attend as a family.

Between baking & parties.  There were 2 doctor appointments for Joshy.  His cancer center check did not go well - all his levels dropped.  His temp has also been very, very low, so I took him to his regular local doctor.  We are thinking that the increased seizure medication has thrown his system off causing the low temps which is also playing havoc with his blood levels.  He has another check up at the local hospital this week to monitor the situation.

There is also the ECS move going on.  LOTS of odds and ends are getting settled and several several things have already been moved.  We hope to finish moving tomorrow, so that we will have the rest of our break to get things organized and ready for classes which start Jan. 6th.

It has been quite the week!